Literature DB >> 11657239

The right to genetic ignorance confirmed.

Tuija Takala.   

Abstract

One of the much debated issues around the evolving human genetics is the question of the right to know versus the right not to know. The core question of this theme is whether an individual has the right to know about her own genetic constitution and further, does she also have the right to remain in ignorance. Within liberal traditions it is usually held that people, if they so wish, have the right to all the knowledge available about themselves. This right is based on the value of autonomy or on the right of self-determination, and it is sometimes partly justified as a countermeasure to the authorities' control over people. I do not wish to deny the right to genetic knowledge (about oneself). I think that its existence is self-evident. The argument I want to put forth in this paper is that in liberal societies we should acknowledge people's right to remain in ignorance as well. The only reason for not doing this would be that grave harm to others would follow if people were allowed to make these seemingly self-regarding decisions. Arguments presented against the right to ignorance are two-fold. First there are those arguing against the right to ignorance on the grounds of harm to others, that is, philosophers who do not deny people's right to ignorance in self-related matters but wish to state that genetic ignorance causes harm to others, and this is one of the most commonly accepted reasons for restricting people's freedom. The other line of argument flows from the Kantian view that not even merely self-regarding foolishness (in the eyes of others) should be allowed.

Entities:  

Keywords:  Analytical Approach; Genetics and Reproduction; Professional Patient Relationship

Mesh:

Year:  1999        PMID: 11657239     DOI: 10.1111/1467-8519.00157

Source DB:  PubMed          Journal:  Bioethics        ISSN: 0269-9702            Impact factor:   1.898


  15 in total

1.  Genetic ignorance and reasonable paternalism.

Authors:  T Takala
Journal:  Theor Med Bioeth       Date:  2001-09

Review 2.  Genetic information, rights, and autonomy.

Authors:  M Häyry; T Takala
Journal:  Theor Med Bioeth       Date:  2001-09

3.  The right to ignore genetic status of late onset genetic disease in the genomic era; Prenatal testing for Huntington disease as a paradigm.

Authors:  A Erez; K Plunkett; V R Sutton; A L McGuire
Journal:  Am J Med Genet A       Date:  2010-07       Impact factor: 2.802

4.  Overcritical, overfriendly? A dialogue between a sociologist and a philosopher on genetic technology and its applications.

Authors:  Mairi Levitt; Matti Häyry
Journal:  Med Health Care Philos       Date:  2005

5.  Questioning the consensus: managing carrier status results generated by newborn screening.

Authors:  Fiona Alice Miller; Jason Scott Robert; Robin Z Hayeems
Journal:  Am J Public Health       Date:  2008-12-04       Impact factor: 9.308

Review 6.  Antenatal genetic testing and the right to remain in ignorance.

Authors:  R Bennett
Journal:  Theor Med Bioeth       Date:  2001-09

7.  Consent to epistemic interventions: a contribution to the debate on the right (not) to know.

Authors:  Niels Nijsingh
Journal:  Med Health Care Philos       Date:  2016-03

8.  Prenatal Testing for Adult-Onset Conditions: the Position of the National Society of Genetic Counselors.

Authors:  Laura Hercher; Wendy R Uhlmann; Erin P Hoffman; Shanna Gustafson; Kelly M Chen
Journal:  J Genet Couns       Date:  2016-07-01       Impact factor: 2.537

9.  Ethics, genetics and public policies in Uruguay: newborn and infant screening as a paradigm.

Authors:  Mariela Larrandaburu; Ursula Matte; Ana Noble; Zully Olivera; Maria Teresa V Sanseverino; Luis Nacul; Lavinia Schuler-Faccini
Journal:  J Community Genet       Date:  2015-05-29

Review 10.  Discouraging Elective Genetic Testing of Minors: A Norm under Siege in a New Era of Genomic Medicine.

Authors:  Laura Hercher
Journal:  Cold Spring Harb Perspect Med       Date:  2020-05-01       Impact factor: 6.915

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